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Saturday, June 24, 2017

IDEA Full Funding

Today, Representatives Jared Huffman (D-CA), David McKinley (R-WV), Tim Walz (D-MN), Dave Reichert (R-WA), Kurt Schrader (D-OR), and John Katko (R-NY) introduced the bipartisan IDEA Full Funding Act, H.R. 2902, to level the playing field for children with disabilities and provide them with a high quality education.
In 1975, Congress passed the Individuals with Disabilities Education Act (IDEA), with the goal of guaranteeing that every child with disabilities would have the opportunity to reach his or her full potential. At that time, the federal government committed to pay 40 percent of the average per pupil expenditure for special education. Unfortunately, that pledge has never been met: current federal funding makes up just 15.7 percent. The bipartisan IDEA Full Funding Act would require regular increases in IDEA spending to finally meet the federal commitment to America’s children and schools, relieve the burden on states and local school districts, and ensure educational opportunities for all students with disabilities.
“The law guarantees every student the right to a free and appropriate public education, but Congress needs to provide the resources to make that guarantee meaningful.” said Rep. Huffman. “That’s why I’m joining with my colleagues from across the aisle to introduce the IDEA Full Funding Act, because we know that providing our children with a first-class education should not be a partisan issue. The bottom line is this: no child should ever be denied a quality education, or be kept from reaching their full potential, because they have a disability. The IDEA Full Funding Act, which is supported by teachers, parents, school leaders, and disability advocates, would ensure our schools have the resources they need to support students with disabilities, and that Congress finally meets its commitments to all students.”
“The Individuals with Disabilities Education Act created a commitment to children with special needs and their families,” said Rep. McKinley. “This is a promise the federal government has failed to keep until now. The IDEA Full Funding Act puts us on a path towards fulfilling the promise we made to our children and grandchildren”
“As a teacher, I believe every child deserves a shot at the American Dream and the chance to reach their full potential,” said Rep. Walz. “The federal government needs to hold up their end of the bargain to ensure this promise can be reality. This legislation helps us uphold one of our nation’s core values: every child deserves the opportunity to succeed.”

“In four decades, we’ve failed to keep up with our own promise, as Congress mandated by law, to fund education programs for students with disabilities,” said Rep. Schrader. “This is unacceptable for every one of our students. It’s the schools that have to pick up the tab where we’ve fallen short. That not only costs our school districts money, but it takes away from other programs, diminishing the overall quality of education our communities can provide. Our bill will finally fulfill that promise and relieve our schools, giving them the ability to better fund programs like Advanced Placement, CTE, and STEM.”
"After over 40 years of the Federal Government failing to fulfil its promise to students of all abilities throughout our country, I am proud to work with my colleagues to introduce this crucial piece of legislation,” said Rep. Katko. “This bill will require the Federal Government to finally meet its commitment to support special education and the teachers who work tirelessly to ensure all of our children have an opportunity to succeed."
Rep. Huffman also introduced the IDEA Full Funding Act in the 114th Congress.
Senator Van Hollen (D-MD) plans to introduce companion legislation in the United States Senate.
The IDEA Full Funding Act  is supported by teachers, school administrators, parents, and disability advocates, including: AASA, The School Superintendents Association, American Council for School Social Work, American Federation of State, County & Municipal Employees, American Federation of Teachers, American Music Therapy Association, American Occupational Therapy Association, American Physical Therapy Association, American Psychological Association, American Speech-Language-Hearing-Association, Association of School, Business Officials International, Association of Educational Service Agencies, Council of Administrators of Special Education, Council of Great City Schools, Council for Exceptional Children, Council for Exceptional Children (Teacher Education Division), Council of Parent Attorneys and Advocates, Higher Education Consortium for Special Education, Learning Disabilities Association of America, National Association of Elementary School Principals , National Association of Secondary School Principals, National Association of Social Workers, National Association of School Psychologists, National Association of State Directors of Special Education, National Center for Learning Disabilities, National Center for Transgender Equality, National Disability Rights Network, National Down Syndrome Congress, National Education Association, National PTA, National Rural Education Advocacy Consortium, National Rural Education Association, National School Boards Association, School Social Work Association of America, Software & Information Industry Association, TASH, and The ARC of the United States.


Friday, June 23, 2017

Tim Kaine on Autism, Medicaid, and School

Senator Tim Kaine of Virginia has commented on Medicaid cuts.  In Hampton Roads, Jane Hammond reports at The Daily Press:
"My sense is in the discussion about health care, three things have gotten huge attention: jeopardizing the status of people with pre-existing conditions; the number of Americans that would lose health care, the millions; and premium effects, especially on seniors," Kaine said Thursday. "But I think the Medicaid cuts and the effect on children have not gotten the attention that they deserve. 
"If you're a child is in a school system and you have an IEP (Individualized Education Program, a document developed for students with special needs), because you have a specified disability, the school systems are getting reimbursed by Medicaid for most of what they do for youngsters," he said. "If you are the mom of a kid with autism, and the child is getting some special services at an autism provider, that's likely paid for with Medicaid."
A Wednesday release from Kaine's office:
Today, U.S. Senator Tim Kaine released a district-by-district report on the importance of Medicaid to Virginia’s public schools and how the $1.3 trillion combined cuts to Medicaid in the Trump budget and the Republican health care plan – known as TrumpCare – would harm schools and the children who attend them. In Virginia alone, for the most recent reporting school years, school districts received nearly $33 million in federal Medicaid funding for school-based services for students. Schools use Medicaid dollars to cover health-related services for eligible children and for services provided in a child’s special education plan under the Individuals with Disabilities Education Act (IDEA).
The Trump Administration’s proposed cut to Medicaid would put these funds for Virginia schools in jeopardy. In Virginia, more than one million individuals, including 600,000 kids, rely on Medicaid for health care coverage. In schools, Medicaid dollars are used for both primary and preventive care such as vision and hearing screenings, diabetes and asthma diagnosis and management, occupational and physical therapy, nursing care, mental health evaluation and services, special education aides and instructors in classrooms, and other services and personnel provided to students with disabilities.

Thursday, June 22, 2017

Protesting Senate Trumpcare

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

For many Americans, Medicaid means welfare, which means handouts to lazy bums.  Opponents of Medicaid cuts have to show who actually benefits.

From The New York Times:

Disabled people protested outside Mitch McConnell's office:

Wednesday, June 21, 2017

Trumpcare and Perceptions of Medicaid

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

If critics of Trumpcare want to move public opinion, they need to change the image of Medicaid as a handout to lazy, able-bodied adults. In particular, they need to show that many beneficiaries are people with autism and other disabilities.

Some background:

The Kaiser Family Foundation reports on a survey:
When asked whether Medicaid is more similar to other health insurance programs or to welfare programs, more people see Medicaid as health insurance (60%) than welfare (37%). There is a significant partisan divide in these perceptions, with most Democrats and independents viewing Medicaid as health insurance and a narrow majority of Republicans viewing it as welfare.

Portland Student Can Go to the UN After All

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities

Grant Butler reports at The Oregonian:
After months of whirlwind emotions, a Portland teen who won a trip to the United Nations, but then had the trip denied because he has autism, has learned that he will be able to go on the trip after all.
Niko Boskovic, 15, finished first in an essay contest sponsored by North Portland's Peninsula Odd Fellows Lodge. As the winner, he was given the opportunity to join 300 other winners from around the world for next month's 10-day United Nations Pilgrimage for Youth in New York City and Washington, DC.
But shortly after winning, Niko's invitation to attend the event was withdrawn by the national board overseeing the trip. After his family worked
with Disability Rights Oregon to advocate for his inclusion, the trip is back on.
"We finally got all the details ironed out this week, and the issues have been resolved between the parties," said Loreta Boskovic, Niko's mom, noting that details of the agreement are confidential.

Tuesday, June 20, 2017

Texas Law on Licensing Behavior Analysts

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Sebastian Herrera reports at The Houston Chronicle:
Specialists who treat children with autism in Texas will soon be required to obtain licenses after Gov. Greg Abbott recently signed an amended version of Senate Bill 589 into law.
The bill, by Sen. Eddie Lucio Jr., D-Brownsville, will require licenses for applied behavior analysts, therapists most known for their treatment of autism. After easily passing in the Texas Senate on May 1, the bill also swiftly passed in the House on May 23 before heading to Abbott's desk.

"Because of the tireless work behind SB 589, our most vulnerable Texans who benefit from applied behavioral intervention - such as children with autism, along with those with developmental, intellectual, and physical disabilities, and with brain injuries - will now be protected by SB 589, which will reduce the probability and the possibility of them being harmed by unqualified practitioners," Lucio Jr. said in a statement.

The bill's supporters have said a law is needed to regulate the profession. Texas has now joined more than 25 other states requiring licenses for behavior analysts.

Monday, June 19, 2017

Police Involvement

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

At Pacific Standard, David M. Perry explains why schools escalate behavior problems into law enforcement issues.
But schools do punish people when they are panicking, and Sam Crane, an attorney and the director of public policy at the Autistic Self Advocacy Network, is afraid she knows why. Behavior intervention plans, she explains, are part of disability-rights education legislation. Once you have a plan, you have all kinds of added rights as a member of a protected class of American citizen. If you charge someone with a crime, though, schools can skip right past disability law. "Under the IDEA," Crane writes me, "[a] student would be entitled to a manifestation determination, to decide whether his behavior was a manifestation of a disability. There's no such requirement when referring a kid to law enforcement." Crane believes that, around the country, schools are pushing teachers and other staff to press charges.
Ami Tint and colleagues have an article titled "Correlates of Police Involvement Among Adolescents and Adults with Autism Spectrum Disorder" at the Journal of Autism and Developmental Disorders.  The study involved Ontario, Canada. The abstract:
This study aimed to describe police interactions, satisfaction with police engagement, as well as examine correlates of police involvement among 284 adolescents and adults with autism spectrum disorder (ASD) followed over a 12- to 18-month period. Approximately 16% of individuals were reported to have some form of police involvement during the study period. Aggressive behaviors were the primary concern necessitating police involvement. Individuals with police involvement were more likely to be older, have a history of aggression, live outside the family home, and have parents with higher rates of caregiver strain and financial difficulty at baseline. Most parents reported being satisfied to very satisfied with their children’s police encounters. Areas for future research are discussed in relation to prevention planning.
From the article
A history of aggression differentiated individuals who did and who did not interact with police in the observation period. Aggressive behaviors commonly occur in ASD (Kanne and Mazurek 2011; Matson and Rivet 2008; Mazurek et al. 2013), with rates reported to occur in up to 68% of affected individuals at some point in their lives (Lecavalier 2006). These behaviors can result in negative physical, emotional, and financial consequences for family members (Hartley et al. 2012; Hodgetts et al. 2013). Despite a high need and the recognized existence of effective empirically based interventions, there is often a lack of professional knowledge and community-based resources to assist individuals with ASD and their families deal with aggressive behaviors (Hodgetts et al. 2013; White et al. 2012). In the current study, an individual’s history of aggressive behavior, caregiver strain and police contact were associated with each other, further highlighting the need for appropriate community-based family supports

Sunday, June 18, 2017

Pleas on Medicaid and Autism

Tennessee dads recently gathered in Nashville to send a message to Senators Bob Corker and Lamar Alexander. Andy Spears writes at Common Dreams:
The assembled dads each had letters about the importance of Medicaid for their own children.
One of the dads, John Shouse, had this to say:
Senator Alexander, Senator Corker, we gather here today as fathers, with Father’s Day mere hours away, to share with you our concerns with the course of action currently being set in Washington. We are fathers of children with disabilities. We are imploring you to vote to save Medicaid, and the other 'lifeline programs' that are currently facing unprecedented funding cuts. This is a course that, left unchecked, WILL have dire negative consequences for our sons and daughters.
Whether they are young children, or adults trying to find their way in the world now that their school years are over, our sons and daughters face tremendous challenges because of disability. Challenges that most people … even fathers such as yourselves … can hardly imagine.
Shouse spoke of his own experience, having a son with autism who benefits from Medicaid-funded programs.
An autistic person writes The Daily Gazette in Schenectady, New York:
I am 33 years old and I have Aspergers Autism, executive function disorder and I suffer from depression and anxiety.
I’m disabled on Social Security and Medicaid at the moment, I live alone but I get help with transportation and daily chores through an non-for profit called Wildwood.
For most of my adult life, I’ve been unemployed and very depressed. However, in recent years because of therapy, support from wildwood, and my medication I’ve begun to turn my life around. I’m going back to school to earn a culinary degree, I have part-time employment at a local business and am I much happier, healthier person.
Someday I want to get off disability, pay taxes, own a home and run a small business.
However, without my medication and support at moment I can’t do this. These past few years have been the best of my adult life. I can see my goals getting closer and closer to fruition. But if the Trump health care bill goes through, none of this will happen. I will sink back into depression and in action. I need Medicaid and I need the support right now or I will stay in the system forever.

Saturday, June 17, 2017

Medicaid Cuts in Texas, Missouri, and Pennsylvania

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Ashley Lopez reports at KUT-FM:
In a matter of weeks, the U.S. Senate could be voting on a Republican plan to repeal the Affordable Care Act. On Wednesday, 25 health care advocacy groups in Texas sent a letter to Republican Sens. John Cornyn and Ted Cruz raising concerns about the plan.

The groups worry Medicaid per capita caps could be carried over from the House bill, known as the American Health Care Act. For simplicity’s sake, this means spending per person in the Texas Medicaid program could be capped according to how much the state spent in 2016.

Anne Dunkelberg, an associate director with the Center for Public Policy Priorities, said using 2016 Medicare spending as a starting point for what states get could create a lot of problems.
For example, she said, "in 2016 we had axed those [pediatric] rate cuts, and we had many children with developmental delays and disabilities not able to access the services they need.”
In addition, Texas hadn’t effectively made lifesaving hepatitis C treatments available last year in the Medicaid program. Behavioral therapies, which are often used by children with autism, also weren’t rolled into the program by 2016.
Kate Kasper writes at The St. Louis Post-Dispatch:
According to the Center on Budget and Policy Priorities, 602,000 children in Missouri get their health care through Medicaid. This means that two out of five kids in our state are able to see a doctor when they are sick, get vaccinations and important screenings they need to stay healthy. The AHCA’s Medicaid provisions would make it especially hard for children with special health care needs, including those with disabilities, to get the care they need to stay healthy, remain in their communities, and succeed in life. Medicaid is a lifeline for children with disabilities and their families, serving 40 percent of all children in America with special health care needs such as autism.
Alecia Deal, a community health worker in St. Louis and mother of three, relies on this lifeline for her 14-year-old autistic son. Without Medicaid, her son would not be able to receive therapy of any kind, psychiatric treatment or medications. In fact, he would be unable to attend his school for children with special needs because Medicaid pays for that as well.
Steve Tawa reports at KYW-AM:
Pennsylvania U.S. Senator Bob Casey says the bill could trigger major cuts to Medicaid. The School District of Philadelphia, for example, could lose more than $11 million, and all told, Casey says Medicaid funding for the Commonwealth could be cut $135 million.
“None of those dollars should ever be at risk because a group of extreme ideologues in Washington think they have a better way to do this,” said Casey
He waved a letter he received from Pamela Simpson of Coatesville, whose 5-year-old son, Rowan, is diagnosed with Autism Spectrum Disorder, and ADHT. She shared her family’s story, with Rowan in tow.

“We measure success with tiny things that most parents take for granted,” said Simpson. “Will my child be able to use the bathroom by himself? Will be he able to tell us what he did at school today? Will he be able to use a spoon? Those therapies are crucial to help us answer questions like this, with the answer, yes!”

Simpson points out without Medicaid benefits, occupational, physical, and speech therapy, and medication would be inaccessible for her young son.

In Casey’s words, this is “about our basic values, and we’re better than that.”

Friday, June 16, 2017


Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:
Air pollution and proximity to freeways;
Maternal thyroid issues;
Autoimmune disorders;
Induced labor;
Preterm birth;
Birth by cesarean section;
Maternal and paternal obesity;
Maternal and paternal age;
Maternal post-traumatic stress disorder;
Smoking during pregnancy;
Antidepressant use during pregnancy. 
Add one more.
A release from Columbia's Mailman School of Public Health:
Feber during pregnancy may raise the risk for autism spectrum disorder (ASD) in the child, according to a study led by scientists at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health. The effect was most pronounced in the second trimester, raising odds for ASD by 40 percent. Risk of an ASD was increased by over 300 percent for the children of women reporting three or more fevers after the twelfth week of pregnancy.
The study is the most robust to date to explore the risk of ASD associated with fevers across the entire span of pregnancy, and of the capacity of two different types of commonly used anti-fever medications—acetaminophen and ibuprofen—to address that risk. Risks were minimally mitigated among the children of women taking acetaminophen for fever in the second trimester. Although there were no cases of ASD among children of mothers who took ibuprofen, a nonsteroidal anti-inflammatory drug, researchers could not ascertain whether risk was mitigated due to the extremely small number of women using this particular drug for fever. Results of the study appear in the journal Molecular Psychiatry.
The researchers followed 95,754 children born between 1999 and 2009, including 583 cases of ASD identified in Norway through the Autism Birth Cohort (ABC) Study. Mothers of 15,701 children (16 percent) reported fever in one or more four-week intervals throughout pregnancy, similar to rates reported in the U.S. ASD risk was increased by 34 percent when mothers reported fever at any time during pregnancy, and by 40 percent in the second trimester. The risk increased in a dose-dependent fashion from 1.3-fold with one or two fever episodes after the twelfth prenatal week to 3.12-fold with three or more episodes.
“Our results suggest a role for gestational maternal infection and innate immune responses to infection in the onset of at least some cases of autism spectrum disorder,” says first author Mady Hornig, associate professor of Epidemiology and director of Translational Research at CII. Questionnaire analysis did not indicate an association between risk and maternally-reported symptoms of infection in individual organ systems that might implicate specific infectious agents. An ongoing study is testing blood samples collected at mid-pregnancy and at birth to explore the possible role of specific infectious agents and the contribution of distinctive patterns of immune response among mothers and children to understand the mechanisms creating vulnerability.
“Future work should focus on identifying and preventing prenatal infections and inflammatory responses that may contribute to autism spectrum disorder,” says senior author W. Ian Lipkin, John Snow Professor of Epidemiology and director of CII

Thursday, June 15, 2017

Medicaid Cuts and Disability Services

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

At NPR, Alison Kodjak reports on Our Place Day Services, a day center for adults with disabilities, in Slinger, Wisconsin.

"We help men and women become the men and women they were meant to be," says Donna Ellenbecker, director of Our Place.
But she's worried about the Republican plan to overhaul Medicaid.
All but one of her 33 clients pay for their classes and care at Our Place with Medicaid dollars. Wisconsin's Medicaid system includes a program called IRIS that grants people with disabilities a budget, based on their level of need, to use for services that help them live in the community.
The state's approach is part of a national trend in recent decades to move people with severe developmental disabilities out of institutional settings by providing the support they and their families need to live more independently – either with their families, in community-based group homes or even on their own.

Ellenbecker worries that if the current Republican plan is passed, or the kinds of budget cuts Trump is proposing go through, the money for those support services just won't be there.
"It's a 25 percent cut you know, and a 25 percent cut it is going to affect these programs," she says. "There's no way that a 25 percent cut can come out of any other program — except long-term care."
That's because many support services are considered optional under the law that governs Medicaid. So, if state lawmakers are forced to choose between say, job coaches, and traditional medical care, the job coaching is likely to lose out.

Wednesday, June 14, 2017

Study Finds that Inclusion Works

In The Politics of Autism, I write about special education and inclusion.

The National Center for Analysis of Longitudinal Data in Education Research (CALDER) finds in a new report that inclusion works. The abstract:
We use longitudinal data on all high school students in Washington State, including postsecondary education and workforce outcomes, to investigate predictors of intermediate and postsecondary outcomes for students with disabilities. We pay particular attention to career and technical education (CTE) enrollment and the extent of inclusion in general education classrooms, as prior research suggests these factors may be particularly important in influencing the outcomes of students with disabilities. We
estimate models that compare students with other students within the same school district, who are receiving special education services for the same disability, and have similar baseline measures of academic performance and other demographic information. We find generally weak relationships between CTE enrollment in any particular grade and intermediate and postsecondary outcomes for students with disabilities, though we replicate earlier findings that students with disabilities who are enrolled in a “concentration” of CTE courses have higher rates of employment after graduation than
students with disabilities who are similar in other observable ways but are enrolled in fewer CTE courses. We also find consistently strong evidence that students with disabilities who spend more time in general education classrooms experience better outcomes—fewer absences, higher academic performance, higher rates of grade progression and on-time graduation, and higher rates of college attendance and employment—than students with disabilities who are similar in other observable ways but spend less time in general education classrooms. [emphasis added]

Tuesday, June 13, 2017

Medicaid Cuts and the Senate

The Senate is currently considering the American Health Care Act. Autism Speaks has serious concerns with the changes the bill makes to Medicaid, the single most important insurance program for people on the spectrum. Please contact your Senators and encourage them to make Medicaid work for people with autism.
Contact link here:

Alan Fram reports at AP:
President Donald Trump told Republican senators Tuesday that the House-passed health care bill is "mean" and urged them to craft a version that is "more generous," congressional sources said.
The president's comments, at a White House lunch with 15 GOP senators, came as Senate Republican leaders' attempts to write their own health care package have been slowed by disagreements between their party's conservative and moderates.
Trump's remarks were a surprising critique of a Republican-written House measure whose passage he lobbied for and praised. At a Rose Garden ceremony minutes after the bill's narrow House passage, Trump called it "a great plan."

Monday, June 12, 2017

Different Views on Law Enforcement Training

In The Politics of Autism, I discuss interactions between police and autistic people

Florida has enacted legislation requiring autism awareness training for law enforcement officers. Sascha Cordner reports at WUSF:
“So, I’ve been an advocate for over 20 odd years. I have a child with autism and I know that if a police officer would have stopped him and started pelting questions at him, our kids, their executive functioning just shuts down,” said Victoria Zepp with the Florida Coalition for Children. “They would say anything. They would parrot. They would do things.”
But, some, like Tallahassee Police Chief Michael DeLeo, are a bit skeptical about the new law.
DeLeo says the issue is personal for him since he has family members and friends with autistic children. He says while he was a South Florida officer, he also responded to multiple situations with autistic kids.
“So, I get the issue,” DeLeo added. “But, it’s very easy for the legislature to say, ‘Hey, we’ve addressed the issue because we said law enforcement’s got to take a four-hour class.’ That doesn’t fix the true issue. What it did it now creates an expectation that because our officers went to a four-hour class, it’s going to make it all better. But, we haven’t fixed the issue. We’ve dressed it up. We’ve put some wrapping on it. But, what we really need to be doing is to find out who is the best group of people with the right skillset to see it coming, intervene appropriately, and if we need to be there in a supporting role, that’s what we should be doing. But, we are not the best agency to be solving that.”
Still, Matt Puckett with the Florida Police Benevolent Association—which represents thousands of officers—says DeLeo doesn’t speak for all law enforcement.
“I don’t think it’s feel-good legislation,” he said. “I think it’s important legislation. I think that’s an incredibly insensitive statement for the police chief to make. If you talk to anybody who’s parent of a child with autism, that incident in Miami was their worse fear, their worst nightmare. SO, to better train officers on how to handle dealing with someone who’s on the spectrum to at least notice the signs…if we did nothing, but just that, we’re at least making some progress.”

Sunday, June 11, 2017

Medicaid and IDEA

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Social worker Vivienne Selia has a letter in the Pittsburgh Post-Gazette:
As a social worker, I have worked with individuals with various disabilities and their families for more than 20 years and have seen the importance of Medicaid dollars to the well-being of children and families.
For those children and young adults between the ages of 3 and 21 who are in school, IDEA (the Individuals with Disabilities Education Act passed in 1975) ensures that they will receive an appropriate education. Very often that will include a need for one or more therapies (speech, occupational, physical, behavioral) and/​or individual aides or nursing care so that the person can learn to his or her best ability. Medicaid pays for many of these services. Most school districts could not manage to provide these services without drastically cutting other programs. In Pennsylvania, many districts are still trying to recover from Gov. Tom Corbett’s education cuts and do not have the thousands (or millions) of dollars necessary to pay for all the services mandated under IDEA.
IDEA also calls for early intervention services for children birth to age 2. If parents (or the rest of us) want children to have a chance at a productive life or life itself, Medicaid is needed. It helps to pay for services for premature babies and those born with special needs. Costs can be enormous and lifelong.
We have come a long way in helping to provide for people with disabilities, and now it appears that we are on the brink of going backward.

Saturday, June 10, 2017


In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

At NPR, science journalist Erik Vance has insights into the fear underlying the bogus theory.  He discusses "nocebos," which happen something unhealthy happens to a body, solely based on the person's belief.
Scientists have found that nocebos are easier to create than placebos, and last longer. So fear is more powerful in the body than hope. Saying "fear is a powerful thing" is a little like saying "money can come in handy" – it kind of undersells it. Fear is the number one tool for selling newspapers, insurance, snake-oil medicine and Swedish cars. Sometimes that's a good thing and sometimes it's not. It's what kept our ancestors alive for millions of years and its history's favorite way of selling political ideology.
So it's not surprising that fear forces people to accept some strange ideas about medicine. The most tragic and extreme of these are cancer patients so terrified of modern cancer therapies that they turn towards more "natural" solutions and shun proven treatments that could have saved their lives.
I would gladly suffer a few rounds of chemotherapy to prevent harm from coming to my child. The bottom line is that what happens to me when I go in for my kid's shots has nothing to do with vaccines or mercury or thimerosal or any science whatsoever. It's about fear and a loss of control.
 Maybe I've done one too many stories on autism and crossed some kind of threshold. That's how I ended up sweating when in the doctor's office again two weeks ago, waiting for the 18-month vaccination that would protect him from diphtheria, meningitis, whooping cough and tetanus. Here I was again, deeply ashamed yet still wondering if we should put off the shot until it was "safe."

Friday, June 9, 2017

"Afraid to Die"

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Michigan Radio reports on disability services in the state:
For parents of children with disabilities, this is a deeply personal issue. Many of them, like Bob White and Gail Marsh, work hard to advocate on their children's behalf so that they can get the mental health services they need to lead healthy, happy and productive lives. They both joined Stateside to talk about their struggles and successes with the state's mental health care system and why they are worried about the prospect of changing the system their children rely on.

White is the father of two sons who are on the autism spectrum and he lives in Clarkston, and Marsh is the mother of an adult daughter who has Down Syndrome and she's from Grand Rapids....

"My wife and I are afraid to die," White said while fighting back tears. "Every year, we as parents, we aren't going to be around to advocate on their behalf. To make the trips to Lansing, to go to the meetings. We have to come up with something that's more sustainable so that we have the confidence that when we're not here, that our two guys, Gail's daughter and others like them, are going to be taken care of."
Gail echoed those sentiments. "I said that to the group of 135 persons at the Section 298 work group, I told them that myself and other families that I'm aware of, we have a confession, like Bob, are hoping that our sons and daughters don't live longer than we do because we can't trust that there's a system that's going to take care of them."

Thursday, June 8, 2017

Americans with Disabilities: Data

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

From the Census:
On July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act, which prohibits discrimination against people with disabilities in employment, transportation, public accommodations, commercial facilities, telecommunications, and state and local government services.
This Facts for Features provides a demographic snapshot of the U.S. population with a disability and examines various services available to them. The statistics come from various Census Bureau censuses and surveys, covering differing periods of time.

Population Distribution

56.7 million  The number of people in the United States with a disability in 2010, representing 19.0 percent of the civilian noninstitutionalized population. People with a disability have a physical or mental impairment that affects one or more major life activities, such as walking, bathing, dressing, eating, preparing meals, doing errands alone or doing housework. A disability can occur at birth or at any point in a person’s life.
Americans With Disabilities: 2010
How Common Are Specific Disabilities by Age?
Percentage of civilian noninstitutionalized population

15.7 million The number of people age 65 and older with at least one disability, according to data collected from 2008 to 2012, which makes up 39.0 percent of the population in this age group. Of this group, two-thirds had difficulty in walking or climbing stairs. The second-most cited disability was difficulty with independent living, such as visiting a doctor’s office or shopping.
Older Americans With a Disability: 2008-2012
14,060 The number of business establishments that provided pet care (except veterinary services) in 2012. These businesses generated revenues of $3.4 billion. Among these businesses are those that train assistance dogs.
2012 and 2007 Comparative Economic Census Geographic Area Series (NAICS 812910)
25,964 The number of business establishments primarily providing services for the elderly and persons with disabilities in 2012. These establishments provided for the welfare of these individuals in such areas as day care, nonmedical home care or homemaker services, social activities, group support and companionship. These businesses employed 901,359 workers and generated $34.1 billion in revenues. In 2015, these businesses generated $40.7 billion in revenues.
2012 Comparative-Economic Census Geographic Area Series (NAICS 624120) 2015 Service Annual Survey (NAICS 624120), Table 2
7,832 The number of business establishments providing vocational rehabilitation services in 2012. These businesses employed 312,659 people and generated revenues of $12.4 billion. In 2007, there were 7,631 such establishments, employing 303,713 people and producing revenues of $11.5 billion. These businesses provide job counseling, job training and work experience to people with disabilities.
2012 and 2007 Comparative Economic Census Geographic Area Series (NAICS 624310)
 Specific Disabilities
Note: All statistics in this section come from the 2015 American Community Survey, measuring the civilian noninstitutionalized population.

12.9 million The number of people age 18 and older in 2015 who had serious difficulty concentrating, remembering or making decisions due to a physical, mental or emotional condition. Among people age 65 and older, 4.2 million had serious difficulty concentrating, remembering or making decisions.

14.2 million The number of people age 18 and older in 2015 who had difficulty doing errands alone, such as visiting a doctor’s office or shopping, due to a physical, mental or emotional condition. Among people age 65 and older, 6.9 million had difficulty doing errands alone.

7.5 million The number of people age 18 and older in 2015 who had difficulty dressing or bathing. Among people age 65 and older, 3.8 million had difficulty dressing or bathing.


$21,572 The median earnings in the past 12 months for people with a disability. This is 69.0 percent of the median earnings, $31,872, for those without a disability. (Both figures pertain to the civilian, noninstitutionalized population age 16 and older, with earnings in the past 12 months.)


Note: The source for the statistics in this section is Desire to Move and Residential Mobility: 2010-2011, which come from the Survey of Income and Program Participation.

12.5% The percentage of householders with a disability who desired to move to another residence, higher than the corresponding figure of 8.2 percent for those without a disability. Those with mental disabilities were the most likely to desire to move (20.6 percent).

17.3% The percentage of householders with a disability who desired to move to another residence and actually did so over a one-year period.

9.3% The percentage of all householders with a disability who moved to another residence over a one-year period.

Wednesday, June 7, 2017

Measles, Minnesota, and Texas

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Dr. Lindy McGee, chair of the advocacy committee for the Immunization Partnership, writes at The San Antonio Express-News:
About six years ago, a Texas resident visited Minnesota three times to talk with its Somali community. Not just any Texas resident: This was Andrew Wakefield, the doctor disgraced for his fraudulent 1998 study claiming a connection between autism and the measles vaccine.
Dozens of studies have since proven Wakefield wrong, but scientific fact hasn’t stopped him from continuing to spread harm.

That harm is very real and obvious today. Continued targeting of Minnesota’s Somali community led the vaccination rate to plummet by more than half, to 42 percent, in 2014. And recently, 69 Minnesotans, most of them young children, most of them Somali, almost all of them unvaccinated, fell sick with measles.
Texas is, unfortunately, one of the strongholds of anti-vaccine sentiment, perhaps not surprising considering Wakefield lives in our midst. State lawmakers have refused to take even the most basic steps to fend off a Minnesota-like scenario. Bills died this legislative session that would have allowed parents to view the vaccination rates at individual public schools — would you want your child attending a school with a 42 percent immunization rate? — and that would have had parents take a simple online course to educate them about immunization before they could send their children to school unvaccinated.

Tuesday, June 6, 2017

The Importance of Medicaid

Today is Medicaid Day of Action. Across the country, Americans are protesting Trumpcare cuts to Medicaid.

At NPR, Alison Kodjak reports on an autism family in Glendale, Wisconsin:
While Medicaid is best known as a health care program for poor people, more than 80 percent of its budget goes to care for the elderly, the disabled and children, according to the Kaiser Family Foundation. Only 15 percent goes to health care for able-bodied adults.
The program has been growing in recent years and it now makes up almost 10 percent of federal spending. That's why it's the number one target in President Trump's proposed budget, and figures prominently in the Republican proposal to replace the Affordable Care Act. Some estimates suggest the program could be cut by more than 1 trillion dollars over 10 years.
After three years of intense therapy, Ben now goes to his local public school and works on grade level in math and English. He no longer works with his private therapist or uses Medicaid benefits.
"We just decided not to reapply," Nancy says. "The need had been met."
President Trump and Republicans in Congress have proposed massive cuts to Medicaid's budget over the next decade, and Nancy and Dan Gapinski worry that the services they used for Ben won't be there if he needs them in the future, or be there for other families.
"I don't know what Ben will need in his lifetime," Nancy Gapinski says. "Our goals for him are very much like our goals for our daughter Zoe. We really want for them to be active, engaged citizens.
"In Idaho Falls, ID, Bryan Clark reports at The Post-Register:
More than 100 people rallied Monday in front of the offices of Rep. Mike Simpson and Sen. Mike Crapo. They were there to protest proposed cuts to Medicaid under the American Health Care Act, which recently passed the House but has yet to be taken up by the Senate. Both Simpson and Rep. Raúl Labrador voted for the bill.
The bill is projected to leave tens of millions uninsured while achieving small deficit reductions and large tax cuts for high-income households.
Holly Giglio is the mother of an 18-year-old boy with Down’s syndrome and autism. He, too, is nonverbal. Giglio said despite her family earning a good income, many services her child needs, including services in school and therapy, would be unattainable without Medicaid.
“My husband works at the site,” she said. “My husband makes decent money. We have excellent health care. But we needed Medicaid.”
James Steed, a member of the Idaho Council on Developmental Disabilities who is himself disabled, blasted the AHCA as a measure that would do great harm to people like him.
“Eight-hundred billion dollars — that’s what they want to take away from Medicaid,” Steed told the crowd. “That takes away people’s ability to live on their own. … That takes away the possibility of them living a life free, with choice and control of their own lives.”
The AHCA is, in fact, projected to cut $834 billion from Medicaid over the next decade.